New Year’s Eve, so long 2018

2017 was a doozy, probably the worst year of my life to date.  2018 has been quite a different animal. Yes, there have been some hard days and the adjustment to living life after the traditionally active treatment (i.e., IV chemo) has been rough at times; at the same time, we’ve finally figured a few things out …

  1. We’ve re-discovered that living life closely with family can have ups and downs.  As many of you are aware, after my diagnosis in 2017, my husband, two kiddos and I moved from Orlando to Miami, Florida to live with my parents.  Living close by is my sister, who also relocated to Miami from New York, my other sister, who already lived here in Miami, and my youngest brother, who already lived here in Miami.  Having this much close family time for the first time in decades has brought it’s own challenges and navigating those issues as adults is very different from when we were kids.
  2. We’ve discovered that as soon as things seem stable and quiet, things change!  One of my sons has been in three different schools in 2018.  None of that was his fault and he’s in the best possible place for him now, but the movement during the year and the time he spent outside of school while in the throes of toilet learning were … challenging to say the least.
  3. We’ve discovered that while cancer has changed the fabric of our family in big ways, we are all the same people underneath.  As we’ve reclaimed some normalcy in our lives, we’ve seen glimpses and clear pictures of what is different and what remains the same.  So many important things are still the same.
  4. We’ve discovered that both old and new friends can be just as important and meaningful.  Old friends know who we were before cancer took over our lives but have a hard time understanding how much has changed.  New friends know all about how cancer has irrevocably changed our lives but have a hard time understanding who we were before those fateful words.  Both sets of people are important and need to be prioritized differently.
  5. We’ve discovered that being a part of the right community is important for the whole family.  It has taken us a bit of time to find that community, but I think we have found a place where we are all supported and we can be friends with other families.  A “play date” with a bunch of boys is a little different from “play dates” with girls, but we’re figuring out how to make it work for everyone.
  6. We’ve discovered that I find just as much to do to keep myself busy being a stay at home mom as when I was working.  Its different hours and my priorities are far different, but finding my place in cancer advocacy has been an important part of feeling useful and productive.

At the end of the day, family is the most important.  At the end of the day, the boys being healthy, learning to be authentic and growing up with the values we consider important is so key.  If we can help others along the way, then so much better.  Here’s to ringing in 2019 with a much better outlook on life than 365 days ago!

Compromised Immunity

I have understood for some time that I have a compromised immune system.  It’s hard to ignore when I go to the doctor’s office at least monthly to have bloodwork done and the lab always calls my doctor’s office right away to report the feeble amounts of white blood cells detected.  Learning the medical terms and becoming well versed in the complicated way my own body reacts to the toxicity of the medication that I take every day has become a whole other learning experience.

I’ve always had a strong immune system or maybe I’ve just deluded myself into thinking that.  I would get the colds or flu “going around” especially now that I have kiddos, but I would typically be the last one to get sick and usually it would last the least amount of time.  My husband would chide me regularly for the fact that I didn’t have a primary care physician.  I never missed my yearly well woman visits and would go to urgent care if there was a serious issue, for instance, when I had walking pneumonia or when I had mono.

Now that my immune system is compromised, I still don’t get colds or ordinary stuff, I get weird stuff.  Like the two strains of E.Coli my GI doctor recently discovered.  One was no big deal, but the other one is aggressive and called for immediate treatment; however, the treatment could cause my tendons to rupture and since I take medication that makes my tendons swell, this is a real issue.  I had no idea that antibiotics have a risk of tendon rupture.  I did stop reading all the inserts that come with the medication because it’s terrifying.

My neurologist also discovered that not only do I have a strep infection hanging around in my nasal passages, I also have MARCONS, which is similar to MRSA and is highly antibiotic resistant.  Google and I have a complicated relationship–while I appreciate all the information at my fingertips, I also scare myself regularly.

I do my best to be a compliant patient and I work hard to follow the doctor’s instructions and stay consistent with my medication.  When the boys are sick, though, they need their mamma and if that means I end up having to take more medication, then so be it.  Priorities, you see, are still important, even if you have a terminal illness and are immunocompromised.

METup & Metavivor Trip October 2018

Redemption.  That was my personal theme of the week my husband, Elliot, and I spent in Washington, DC in early October, 2018.  October is generally a hard month for those of us dying of stage IV metastatic breast cancer.  There’s a reason METup’s slogan is #dyingforacure.  Being around all of the fluffy pink celebrations all month long is difficult and heartbreaking.  When we knew that we could redeem that feeling by doing something tangible, we jumped at it.

200 metastatic, early stage patients, caregivers and supporters gathered for the march to the Die In in the early hours of the morning on October 10, 2018.  We compared notes then took off marching for about a half a mile, shouting and chanting … stage IV needs more … don’t ignore stage IV …  what do we want? Research.  When do we want it? Now.  There is something amazingly cathartic about marching and yelling together with 200 of your closest friends.  We even had a motorcade escorting us to the lawn in front of the Capitol building.

Once we reached the lawn, we sat down and then everyone laid down to draw attention to the 114 men and women who will die every day in 2018 from stage IV metastatic breast cancer.  It was 113 each day in 2017.  There were some speakers, then a song that was written just for METup was played and then we rang a bell 114 times.  There wasn’t a dry eye anywhere near us.  In addition to the music and the bells, each person laying down held up a name of someone we lost in the past year.  Not many of the participants were empty handed.  It was powerful.

Once the Die In was concluded, we then walked over to the senate office building for some training and then we were broken down in to states/regions.  The Florida group was the largest.  The Sunshine state was well represented!  Talking to staffers and our own Congresswoman was cathartic.  Again, we were doing something meaningful and tangible.

Elliot and I skipped the debriefing session to spend time with my brother, sister in law and niece.  It was a difficult journey but one that I will never forget.

I learned that I can redeem the devastation of a terminal illness because it’s really hard to tell a cancer patient to be quiet.  I learned that there are many other men and women from many walks of life who have my diagnosis and my perspective.  I learned that being around other stage IV men and women is powerful and what I needed.  I learned that my husband will walk through fire for me with a smile.  I learned that I have a voice and I’m pretty loud. (I’m lying, I knew that already).

October/Pinktober/Stinktober Redeemed

From September 26, 2018

What now?!?

Journal entry by Abigail Johnston — 

I started seeing a new neurologist and he’s working to get to the bottom of my recurring and debilitating migraines. He’s a specialist and I appreciate his thoroughness and attention to details. He reviewed all of my medical records with me and asked me questions no other doctor did. I’m hopeful for good results. The medication he gave me to use during and to prevent my migraines seems to be helping.

One of the tests he ordered was a thyroid ultrasound as he thinks that my ongoing hormonal fluctuations might be related to a thyroid or perhaps a pituitary issue. The ultrasound showed a growth on my thyroid. Not sure what it is yet, but there’s another thing to obsess over.

After getting another X-ray of my pelvis and seeing the orthopedic oncologist, it appears that the heterotopic ossifications in my thighs may have stopped growing. That’s at least what the X-ray showed. Unfortunately the same areas are lighting up even more on the PET scan. This leads my doctor to speculate that there are tumor cells growing/organizing in that area. Tumors/lesions in a muscle are substantially less dangerous than in bones or organs but it’s still so worrisome that there are any at all. Not sure yet but it’s something to watch.

Each time I think that things have settled down or I can find comfort in the new medical issues, there’s something new.

The month of October/Pinktober/Stinktober is coming. This will be the second season of peptobismal pink advertising and misleading the public I’ve had to endure since I was diagnosed. It is easiest to focus on education and making sure to ask everyone to make good choices about where funds go. I can’t ignore the bone deep anger I feel at those companies making money off of “awareness” and “prevention.” I’m enraged even more this year than I was last year. So much money that could go to life saving research goes to line the pockets of the wealthy. The lies perpetuated by so many is so very sickening.

Elliot and I will head to DC for the stampede and Die in. I am hopeful it will feel productive and give me a focus to build on. I’m such a do-er. I need focus and a goal bigger than myself to feel productive.

From August 22, 2018

A rough and overwhelming week

Journal entry by Abigail Johnston — 

Liam started kindergarten this week and it was amazing and nostalgic and fun and I had a hard time focusing. So many other things going on but I’m still doing my best to stay focused on the present and supporting him through this new transition. We love love love his new school and I’m working on getting involved and not getting TOO involved.

Anyway, the biggest fiasco this week was finding out my insurance company denied the PET scan scheduled for Friday. I HATE INSURANCE COMPANIES. With my tumor markers coming up since January, it’s so important to know what’s going on and the PET scan is the gold standard (according to my medical oncologist). I found out in a weird way since the patient seems to always be the last to know important stuff. As soon as I did find out, I got on the phone. Fast forward to this afternoon and I learned that my PET scan got approved!! After a few hours on the phone and dealing with 22 different people, I got the insurance company to do a separate peer to peer with my medical oncologist when I found out the first one was a family medicine doctor 5 years out of school (she was the one responsible for the denial). My medical oncologist is a 30 year specialist in breast cancer. Clearly not her peer. My doctor said it’s the first time that’s ever happened in 30 years, that the insurance company reversed their decision. I also might have read my entire health insurance policy and pointed out at least 10 violations and made sure they knew I’m a lawyer. A great outcome but the cost in time and energy is incalculable. I need to live my life and spend time with my kids, not fight with insurance companies. I HATE INSURANCE COMPANIES. I’m not sure I’ve been this furious since I started treatment. The gall of them. Anyway, hopefully they got the message this time and the next PET won’t be such a fight.

In other news, my neuropsychological evaluation demonstrated that I’m operating at a 20 Point IQ deficit due to the affects on my brain from chemo. That’s quite an impact. Good news is that I qualify for cognitive therapy. I have an evaluation next week and I expect to be in treatment for several months. The outcomes they are seeing from this therapy, basically targeted brain games, is promising. The neurologist thinks that I could recover most if not all of the deficit.

Finally, I’ve been having some crazy intense migraines. Days and days of excruciating pain and nausea that the medication doesn’t touch. I’ve always had migraines but nothing that worked in the past has been helping. The PET will help to know whether I’m dealing with mets to my brain (rather rare). I also will see a neurologist who specializes in migraines the first week of September. He doesn’t take insurance and his appointments are 4 hours long. I’m hopeful that adding his input will help.

So, there you have it. A difficult several weeks and why I can’t seem to get much done nowadays besides getting to doctors and driving the boys to school.

From August 3, 2018

#fakenews??

Journal entry by Abigail Johnston — 

Can’t resist a bit of political humor in an effort to deflect the potential seriousness of this post. Tumor markers are still rising. While they are not 100% reliable in terms of signaling a progression, it’s creating some serious heartburn in our household. Just this week, my medical oncologist was talking about putting off my next scan until November and now I’ve a scan later on this month. Hoping it is just a false alarm (my version of fake news); however, I see too many of my fellow metsters receiving news of progression and entering hospice to be ignorant of what may be happening.

In other news, I finally finished all of the neuropsychological screening and testing. All of the results point towards cognitive issues most likely as a result of the chemotherapy last year and potentially the ongoing medication that is keeping the mets in check. I meet with my neurologist next Monday to find out what may be the solution(s) to my forgetfulness and slow processing speed.

Liam starts kindergarten this month … can’t believe how big he is and how much time has passed. Praying and hoping to be here for many more first days of school!!

Christmas

It’s pretty universal that everyone likes to get presents; yet, there’s something super special about watching a child on Christmas morning.  My boys really get into the decorations, the magical parts of Christmas and they love Christmas morning.  They wade through the paper with startling efficiency and announce and compare their gifts loudly and frequently.  It is magical to watch their enthusiasm and excitement.  Best Christmas gift ever, they exclaim about each and every gift!  I am hopeful to hold onto that enthusiasm and excitement as I celebrate each new day as a gift of life and time with those precious people in my life.  There is always that little whisper in the back of my mind, questioning whether this will be the last holiday I’ll be able to celebrate.  I don’t know the answer to that question, I just know that I am enjoying this holiday, this time with my family.

Merry Christmas 2018